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My husband and I need help!

PostPosted: Sat Jun 02, 2007 9:18 pm
by Chris'swife
I've been lurking and learning for the past couple of weeks. I believe this is the most educational site on the internet. My husband, Chris, age 60, is newly diagnosed with primary lymphedema tarda. It is in both legs and abdomen. He has a host of other problems: fibromyalgia, congestive heart failure, atrial fibrillation, morbid obesity, mild COPD and polyneuropathy :( . During 5 months of constantly questioning his cardiologist about the worsening edema in his foot and up his legs, with the limbs becoming hard as rocks, all we ever got was "well, he can take more Lasix" and "all edema isn't from CHF." Finally, a new doc came to our tiny (pop. 300) town, took one look and pronounced it lymphedema. We have had 6 visits to a lymphedema therapist now, one leg is in a Jobst compression hose and the other is bandaged. The therapist found fluid in his abdomen and has been very careful and slow because she doesn't want to throw the fluid up around his lungs or heart. We are very disheartened because he has lost no more than .5 cm. in any meausred area. I am a retired paralegal with a specialty in med mal, so I am quite knowledgeable about medicine and research. I find your site so helpful. I am learning to do the wraps (did it by myself Friday) and I am doing gentle massage in his groin and legs, because he is in so much pain. I don't do it if I find any firmness in his abdomen, and I start with his groin. I've done this for 2 days now and it seems to be helping. Question: Should we ask for a slightly more aggressive touch in therapy? I have real problems doing this for him: I am disabled by SS from a 3 level failed fusion in my lower back, arthritis in both hands and tenosynivitis in my right hand, following carpal tunnel surgery. I worry that I will not be able to hold out physically to do what he needs and I have no help. Seems like we're getting nowhere. Am I just being impatient? What I really need right now is some emotional support. His family is not local, do not understand and really don't seem to care. Home health care is no solution because they can't do the bandaging and massage. I feel like we've both hit the wall and I just don't know what to do. Thanks to any and every one who can offer suggestions.
Lee

PostPosted: Sun Jun 03, 2007 2:46 am
by patoco
Hi Lee :)

Super welcome to our family here :!:

I know it must be frustrating and difficult, but with your husbands CHF, the therapist is doing the wisest course of treatment.

Having the fluid pushed into his chest/cardio cavity is a very real possibility and it would be disasterous for him.

I had that happen last year and it was brutual. Both lungs almost totally filled with fluid and I wound up being in the hospital for almost two months. The docs wound up having to take 60 lbs of fluid of my chest/ab area.

I can't send enough Irish blessings your way nor can I thank you enough for helping your hubby as you have been doing. I can imagine how difficult it has been for you having gone through the failed fusion.

Also, I wanted to say that if the cardio does want him to continue on the lasix, do so. Because of my seeming total lymphatic failure, I too am having to be on that. Sometimes, it is necessary.

But I am glad for that new doc. Isn't it interesting, I was also diagnosed by a small town family doctor in 1959.

Just remember you all are not alone and we are all here for you :!: :!:

Special hugs and encouragment to you.

Pat

Thanks, Pat

PostPosted: Sun Jun 03, 2007 9:31 am
by Chris'swife
It's amazing what a small human kindness can do for the spirit. :D Thanks so much for your reply. I did a very gentle manual drainage massage on his legs last night (after clearning his groin) and was able to soften his legs quite a lot without any going into the abdomen, it seems. He was more comfortable and his legs seem to be softer and a tiny bit smaller. He slept better. I guess I feel we need to get him "better" so that we can do most of this from home, because therapy is 60 miles away, 3 x week. If we can stabilize him and get measured for garments it would be much easier on both of us. The drive wears him out and causes him a lot of pain and it increases my back and hip pain. He is on 60-120 mg. Lasix and a host of other blood pressure and heart disease medication; Chris had a full heart workup in February and found nothing new. After our new internist made her diagnosis of LE, I confronted the cardio about failure to diagnose. As a cardiovascular surgeon he should at least have realized the leg was n't just normal edema, especially with a perfectly square section of dark brown skin with ridges cutting right across the bend of his ankle and a thick, wooden feel to his skin. He responded by sending us to a wound care specialist who knew nothing about LE but suggested the area might be from venous insufficiency (which should have definitely been within this cardio's realm of knowledge). If he had caught the problem when we first questioned him, it would have been very early on and we could have started therapy 5 months ago. I'm sure many on this forum feel the same way.

PostPosted: Thu Jun 07, 2007 12:46 am
by Lefty
Hi Chris' wife and welcome. I am a new member (4 months) and read your post and completely understood your manual drainage challenges considering your own health. Since I've been diagnosed and fitted with compresion hose, I've been doing my own manual drainage. I have tendinitis in both hands and occasionally wear the hand splints to bed. I still work full time and use the computer 99.9 percent of the time. I'd like to share a small technique that works for me while doing my own manual drainage: use your arms more than your hands as the power source in pushing and directing the strokes. At first, I started off putting too much focus on my hands doing all the work but my hands would ache and everything woud stop. Soon, out of frustration, I began to generate my strength from my upper arm motions and my hands would follow instead of lead. You may find a little relief from overworked hands if you consider this method. Best wishes.

manual lymph drainage

PostPosted: Thu Jun 07, 2007 12:14 pm
by suzeeq
Hi, this response is to Lefty. I was reading your post to Chris' wife about how you used arm strength for MLD as opposed to hand. If I understand correctly, manual lymph drainage is done with a very light touch. You should not be moving the skin at all and certainly not the muscles. You can collapse the lymph vessels if you use too hard of a touch. I have had 5 different therapists do mld on me, and they all have been different, but it should not feel like a regular deep massage. I was just concerned that you and Chris' wife might be massaging too deep if you have pain in your hands. Just trying to help! Susan

PostPosted: Thu Jun 07, 2007 2:24 pm
by marigold
My sympathies to Lee and Chris. Lee, you deserve an Angel award for helping as much as you do, and giving Chris the support you do. (Yahoo has an angel emoticon, but there isn't one here, so imagine it!)
Although Suzee definitely has a point--that in our frustration and our desire to hurry things along, we might use too much force in doing the MLD massage--Lefty's advice is helpful. The repetitive motion with the hand in certain positions could certainly cause cramping and pain, especially to people who already suffer from tendinitis or arthritis. I will also point out that although one can do the massage on a leg without "moving the skin" (in Suzee's words), on the softer areas of the body (like the pelvic region) it's not really possible.

Marigold

Re: manual lymph drainage

PostPosted: Thu Jun 07, 2007 6:22 pm
by Chris'swife
suzeeq wrote:Hi, this response is to Lefty. I was reading your post to Chris' wife about how you used arm strength for MLD as opposed to hand. If I understand correctly, manual lymph drainage is done with a very light touch. You should not be moving the skin at all and certainly not the muscles. You can collapse the lymph vessels if you use too hard of a touch. I have had 5 different therapists do mld on me, and they all have been different, but it should not feel like a regular deep massage. I was just concerned that you and Chris' wife might be massaging too deep if you have pain in your hands. Just trying to help! Susan


Suzeeq: Thanks for your message. If you reread my post, I said I'm doing "gentle" massage. I already have tenosynivitis and I am just concerned about the use of my right hand in general. Chris has many other health problems and I have to do his bandaging, get compression hose on the leg the therapist doesn't want to bandage yet, help with his exercises, drive him everywhere, and do his drainage. His therapist was trained in Germany and Australia and is very qualified. She taught me to do the mld very lightly, with a sweeping arc movement from back to front and up. She also uses effleurage, a very light brushing arc of the hands that I learned in Lamaza classes years and years ago. Everything I do is very gentle. I had to stop my hand therapy because we drive 120 miles , 3 trips a week, for his therapy, and I just cannot fit mine in. The driving actually bothers my hand more than the massage.

mld

PostPosted: Thu Jun 07, 2007 9:17 pm
by suzeeq
Hi Lee, the response I gave was mainly to Lefty as he sounded like he was using some force. I realize that you stated that you were doing a gentle massage. I can empathize with the application of the compression hose. I have always wondered what I would do if I had arthritis in my hands and how difficult it would be to get them on. Arthritis runs in my family, but so far, I have not had any problems. Best of luck to you and your husband. I admire you for all the help that you are giving him, even with your health issues. We all do what we have to. Susan

PostPosted: Fri Jun 08, 2007 12:48 am
by Lefty
Hi Suzeeq,
Thank you for your concern that my suggested technique for MLD may be too hard on the skin. My suggestion was made from the premise that someone already experiencing painful hand condition(s) will undoubtedly present hand pain during repetitive motions such as those used during MLD. As I mentioned, I have tendinitis in both hands and immediately related to what Chris' wife was experiencing during MLD on her husband. Although Chris should check with the therapist on alternative techniques resulting in effective MLD as well as accommodate her hand condition(s), my suggestion was intended to offer a "motion and movement" alternative to her existing motions which may trigger hand pain. My point was that I have found in my personal experience that the source of strength and endurance of an at least 30 minute session should originate from the upper arms and not directly with the hands. For me, as a beginner, I started out automatically focusing my endurance on my hands while doing my own MLD (and no, not hard and deep tissue movements but gentle and effective movements like the therapists). My hands started hurting after the first 10 minutes :!: Even when using a nice body oil the pain continued in my hands. Like mentioned in earlier post, out of frustration, I found what worked and helped my hands to last through the whole session was to focus my movements on the upper arms (hey, one can have an upper body workout at the same time) and to let my hands follow, not the opposite. :) By the way Suzeeq, I am a woman not a man :lol:

hand pain

PostPosted: Sun Jun 10, 2007 2:18 am
by suzeeq
Hey Lefty, I am so sorry, I want to apologize for thinking that you were a man. I don't know why I just assumed that. As for the mld, you definitely sound like you know what you are doing. I really don't know if I am doing mld right on myself. Was only shown once. I have a new therapist now and her technique is SO different from my other therapists, that now I am totally confused as to which way is correct. And to be honest, I don't know that it is helping. But I'm very compliant with the compression hose and bandages, as I can't stand the achiness without them.

PostPosted: Mon Jun 11, 2007 12:05 am
by Lefty
No problem Suseeq. This weeked I thought of Chris' wife and was inspired to try harder when faced with having to help others. My fiance had foot surgery and basically cannot do anything much for himself for 8 weeks. Every weekend I drive one city to his home to help with his spunge offs, food prep., grocery shopping, cleaning of the kitchen, emptying of the garbage, checking the mail, etc., etc., etc.. After 5 weekends of this I cannot take it any more :!: Both my hands hurt, my left side is swollen, I look 6 months pregnant (abdominal swelling), my vision is fading and now my right hip hurts :!: What's up with the hip hurting :?: :?: Sorry, don't mean to vent all my issues. I'll try harder after I take some quiet time for myself---I must do it for myself if I want to survive :!: